Steroid and Acthar help PLEASE!

[Dreams008]

My first question is how much is too much. I did a 5 day course of IV Solumedrol in April of 2013. Because that didn't seem to get me out of the slump I was in, the doctor prescribed me a 5 day course of Acthar gel in June of 2013. Now in January 2014, I'm going through another episode and my doctor put me on Acthar again. I haven't received steroids/Acthar 7 months? Is three rounds of short-term steroids (5 days) too much?

Also, I'm on day 4 of the Acthar, and while I don't see much improvement yet, my eyes are very blurry. I know I have healthy eyes, as I just had my eyes checked in December. Is this normal to have blurry vision on Acthar?

[Kimba22]

Hi Dreams008,

There are serious cumulative long term side effects associated with steroids, but sometimes the benefits are worth the risks. It all depends on how much the flare is affecting your quality of life. Eventually, it will stop without steroids. Many people choose not to use them and will just wait out their flares. Here are some links about both steroids and Acthar gel, along with possible side effects: http://www.nationalmssociety.org/abo...ids/index.aspx
http://www.nationalmssociety.org/abo...cth/index.aspx

I found a couple of threads here about Acthar Gel, but I'm not sure how much of it would apply to you:
http://www.msworld.org/forum/showthread.php?t=129859
http://www.msworld.org/forum/showthread.php?t=128793


Another option sometimes prescribed when a person does not respond to high dose steroids is Plamapherisis. http://www.nationalmssociety.org/abo...nge/index.aspx

I hope others who have had similar experiences will reply shortly. I also hope you are soon over your current flare. I don't know if you are on one of the DMT's or not, if so, I hope one is found that reduces your disease activity, soon.

Take care ,

[MSer102]

My first question is how much is too much.

"Too much" is a relative term. As pointed out, it's a question of benefits vs. risks. The purpose of steroids is to shorten the length of a flare. They don't have any effect on the outcome.

That's where the benefit vs. risk is important. It makes sense to try to shorten a flare that's having a serious effect on people's daily activities or puts them at other risk. Flares that wipe out vision, cause balance problems that make a person unable to function or puts them at serious risk of falling, paralysis or extreme weakness that makes a person unable to function normally, or widespread numbness that puts a person at risk of having a severe injury but not being aware of it are all reasons to treat a flare. Just having symptoms that a person can function through is probably not a reason to take on the damaging effects of steroids (including Acthar), let alone repeatedly.

Too much depends on the situation, so what symptoms you are using steroids for is the key to how much is too much. It's not so much a question of how often but more of whether the steroids are being used appropriately with regard to seriousness of symptoms and benefit vs. risk. Using Acthar or steroids is "too much" if they're being used to treat relatively mild symptoms, even if it happens only one time.

You'll have to be the one to compare your symptoms to the risk of the steroids and Acthar and determine if it's too much in your situation.

Some doctors reserve steroids for only the most serious flares that affect activities of living and other doctors (over)use them freely to make themselves look responsive and to patients happy so they'll go away and quit bothering them.

Is this normal to have blurry vision on Acthar?

I've never been on Acthar but I've read that the side effects are similar to high dose steroids. I always have blurry vision on high dose steroids. It's apparently a common side effect but it rarely appears on a list of steroid side effects. So if the side effects of Acthar are similar to steroids, then it might not be unusual for vision to be blurry while taking Acthar. It's a good idea to ask your doctor about it. But I also think that Acthar is currently used so infrequently that your doctor might not even know what all of the side effects are.

[Dreams008]

Thank you for your responses. Yes, it is severely impacting my quality of living. I can barely walk, my balance was horrible, and I was literally weak from head to toe. Even lifting my head and torso was so hard. I couldn't even move in bed. Such a scary feeling to feel so helpless when you live alone. It seems to be helping a tiny bit, but at least I'm able to get to work. I have the Bioness, which keeps me somewhat upright and able to get from point A to B. The main side effects I have from the Acthar are chest pain, which I had before so I am not too concerned about, and the blurry vision. The vision, however, is no different today than it was yesterday, so I'm thinking I'll be ok. My last injection is tonight and then I will be preparing myself for the "crash" I always get, whether it's Solumedrol or Acthar. I'm doing a really good job of limiting my sodium intake and sugars. Last time, on Acthar, I blew up like a balloon because of water retention. So, yes, I do feel the Acthar was warranted, as I wasn't able to function at all. When it comes to mobility, that's the one thing I fight for. Thanks again for your input.

[MSer102]

Thanks for the update. I'm glad to hear you're feeling a bit better.

I think you asked an important question. In your case, it sounds like your steroids and Acthar were not too much because of the seriousness of your symptoms. I think that your situation is precisely what steroids should be used for, even if your episodes were only months apart. The benefit you are getting is worth the tradeoff of the bad side effects. So not too much.

That reminds me of something that happened to me years ago. I had another episode of optic neuritis and the ophthalmologist I saw said, "We don't like to give steroids. Steroids are bad for you." Well, I told him that blindness and paralysis would be pretty bad for me, too. He had nothing to say in response to that. He ordered my IVSM and I never had a problem with him after that.

Again, I'm glad to hear that you are doing better. I hope your Acthar crash isn't too bad and you recover quickly.

[Temagami]

The steroids give you high blood sugar which leads to the blurry vision. I learned that while on steroids to ingest zero sugars - white or otherwise - no syrups, etc. This curtailed the blurry vision completely. Watch out for hidden sugars in items that you would not think would have sugar. I would even be careful with sugary fruits and veggies. It´s only for a short amount of time that you need to be so wary. Veggies that are dark green won´t up your blood sugar all that much. Also avoid white flours.